Newly Diagnosed With Osteoarthritis-Knees

[Elphaba-]

Hello!

I am new to the community! I just got diagnosed with Stage 4 Osteoarthritis in my right knee, and Stage 3 Osteoarthritis in my right knee. I’m 35, so my doctors would like to wait on knee replacements because they last 15-20 years. We are on a pain management plan that is helping tremendously, and I am so, so relived because the initial diagnosis was very depressing. I have been an athlete my entire life, and have had to adjust to a new normal for myself. It really hit home that I need to put my health first from now on!

I’m looking forward to making connections with people who understand this condition! Thanks so much!

[Caoimhe2019]

Hi Elphaba, so sorry to hear you've developed OA in your knees. I'm no medic so I can only tell you about my personal experiences of it as a patient, which were some years ago - things may have changed a bit by now, and but this is what I know about knee replacements in the UK from about 20 years ago to the present. I was diagnosed with OA in my early teens - like yourself, the result of a sports injury, but I was a child and had cartilage surgery in an attempt to repair the knee. By the time I hit 30 I was told that I urgently needed a knee replacement - but couldn't have one because I was too young. I was told I had to wait until I was 55 (!!!) or come back sooner "when you can no longer walk, drive etc". The reason for this was that the flashy new replacements weren't readily available for NHS patients at that time, & you could only have one of the older (more cranky, less efficient) ones, which would have to last for the remainder of your life. Around a decade later, I could no longer walk, drive or work so was referred back to another consultant - I expected to be sent away again, but he said he would do the replacement asap. I was 44 when I had the surgery, but suspect they would have done it sooner had the new replacements been available on the NHS.

My replacement is a partial lateral, & one of the flashy new ones - it has a lifespan of around 10-15 years, & when it wears out it can be replaced, so I can have as many as are necessary. My replacement is now around 8 years old & is still in tact & functioning correctly, so I'm hoping to get a few more years out of it yet before they replace it. The replacement lifespan is dependent on how active you are, so they do expect replacements in 'younger' / sporty patients to wear out more quickly. What I have learnt more recently is that they prefer to first do partial replacements on 'younger' patients because they know these patients will need (what I call) 'replacement replacements' but this may not be possible depending on the condition of your knee. I have recently been told that when they replace my existing partial, they will be fitting a total knee replacement in its place - I do have some arthritic issues in the rest of my knee but not enough to require a full replacement. The reason for this is that in replacing a partial with a full replacement, it is possible to get a better 'fit' and final outcome. These are simply my own experiences of this; I would hope that it would be a similar scenario throughout the UK, but this may not be the case.

So yes, you can have joint replacements at an earlier age if the consultant considers your condition and quality of life to be sufficiently severe. Your pain management plan sounds excellent (I wish I'd been offered something similar!) and I would strongly urge anyone with OA to cling on as long as possible before opting for surgery. The joint replacements are amazing things, and can massively improve your quality of life and mobility. Apparently the timing of surgery can be crucial and impact on the final outcome, so the consultants need to get that balance right and not do the surgery too soon.

I hope at least some of this is helpful to you.

Take care

[Elphaba- in reply to Caoimhe2019]

Thank you so much for your reply! That helps so much! I’m not sure of the differences between the US and U.K.—it doesn’t sound like much. They haven’t brought up a partial replacement, they are dead set on waiting...I just have no idea how long the right one will last, since it’s grade 4 with awful bone spurs, etc. The orthopedist was aghast...which was funny and sad.

What I am worried about is having to go up the pain management ladder with the stronger pain medications. I am on a low dose right now, combined with a high dose of Ibuprofen, and am hoping it can stay that way. But 10-20 years is a long time.

Thank you again!

[Caoimhe2019 in reply to Elphaba-]

Hi Elphaba, so glad this was of some help to you! Yes, it's scary when your test results shock even the orthopaedic professionals but I've found that in such circumstances they tend to fast-track me through. There are also obvious long-term disadvantages in forcing 'younger' patients to wait if the reason is simply age-related. I've found there is definitely a reluctance to go straight to surgery with 'younger' patients, which is really frustrating when you have so much pain, and at a time in your life when you want to / should be active. You could try this trick - I try to appear more informed than I really am by chucking jargon at medics - this seems to give the impression that I know what I'm talking about, & so far seems to have worked for me. As you may know, the proper jargon for partial knee replacement is 'unicompartmental knee arthroplasty (or UKA) - you could try asking whether a UKA would be appropriate in your case? Would it ease the pain and problems in just part of your knee, and if so, would it be appropriate to give it a try? If it would ease some of the pain, that's worth a try I would think.

The other thing I would mention, which again, seems more relevant to 'younger' patients who are often fobbed off with pain medications for decades as an attempt to alleviate symptoms but avoid surgery, is that in some cases (me included, I'm afraid) this can cause unanticipated reactions to certain meds. In my case, long-term, unmonitored prescription opioids led to an intolerance to them about 5 years ago - they now actually create intense pain all over my body, and so do all other analgesics I've tried recently, so I am now without any painkilling option, which is a horrendous situation to be in. I don't know how common my situation is, it could be quite rare I simply don't know, but I have apparently developed some type of hyperalgesia in response to all the meds I've had to take over the years, even though I'm not a pill fan and have always taken the lowest possible dose. If you are in the US, I gather prescription opioid analgesics are now really difficult to come by due to the opioid crisis, which I think is no bad thing although it does make life extremely difficult without them.

I'm so sorry that you're at grade 4 and still expected to wait another decade or more, that's totally ridiculous! Have you tried for a second opinion?

I do hope this is useful to you, and do feel free to pm me if you'd prefer a private chat. Also, something which may be of interest / helpful is that I recently started a blog about OA and my personal experiences of it - pain, medication, surgeries etc. Again, if you'd be interested, I can pm you the link.

In the meantime, do take good care of yourself

[Elphaba- in reply to Caoimhe2019]

I would love to read your blog! Please do send over the link.

We are in an opioid crisis, but my doctor was fine with putting me on them. He had me sign a contract. I think if you have good reason, they will work with you. I take Norco, and it really helps.

I will ask about the UKA.

That must be so hard to have such a reaction to the opioids!

Take good care too!